Always Learning
June 19, 2010 12:30 PM

Here's a recent picture of Juliana. She still has more surgery coming up, but as you can see, the present work is focusing on building and shaping her cheeks. In case there is anyone "new" viewing these pictures, Juliana has come a very long way in her 7 years. She is a wonderful, happy child. She's always been self-confident and outgoing, winning people over with her friendly personality.

When I was a child I was very overweight, was teased daily by other kids, and was very shy and bashful. I've dreaded the day when Juliana would feel the hurt of ridicule and rejection, but so far, although realizing her differences, she takes it all in stride, and remains "just another kid" (as Kendra once said).

Juliana loves music, and loves to dance and sing. Presently, her mouth is too tight to allow her to clearly enunciate her words, but it is possible to understand her speech. Usually she uses a mixture of talking and signing. She loves school. And she likes to be helpful:

When I arrive in the evening she wants to help me set up my supplies, getting out whatever scissors, tape, bandages, feeding tubes, etc. I might need. She always wants to participate in her own care, helping to place the monitor belt, the humidifier mask, and the feeding tube. She likes to pour the can of tube feeding into the feeding bag. She can snap the hearing processors on and off of the implants. She even likes to help when her trach needs changing out, counting to three and then easing the old one out for me to place the new one in.

Once when I was a new nurse working in a hospital I had a young woman patient who had been very ill for most of her life. She had many treatments and procedures to do and I was intimidated, afraid she could tell I wasn't confident about providing her care. She turned out to be totally knowledgeable about her own requirements and graciously taught me what to do to care for her. She knew belittling my knowledge and skill would not be helpful to her, and she taught me a lot.

I imagine Juliana would behave the same way in a similar situation. I am always learning from her.

—Jeanne ("Party")